"Dumbing" down

I spend my hours watching a variety of programs: Sopranos, Frazier, Zoo, Wayward Pines, Wings. Every once in a while I go on Facebook, Words with Friends, Candy Crush, Trivia Crack. And very rarely, I open a Nook or Kindle book. I read the Great Falls Tribune and Havre Daily News each day. And the lovely thing? Not one of those things require me to speak. I'm engaged but not not engaged. This makes me happy enough.

I did go outside yesterday for a while. It's been too hot lately for me, but yesterday was nice. My garden is still beautiful thanks to Sherry Kegel weeding all summer. Caroline and Amber helped out too. But sitting upright leads to phlegm clogs and anxiety and that is too frightening.

So watching my tv from a reclining position is best. Even this blog is hard to do because it requires me to look down at the keyboard.

Communication through speaking becomes harder and harder. It leads to frustration from everyone. So I retreat to the things that don't ask me to interact verbally.  Yet. I am working with a speech therapist, Kim, to learn the Tobii Dynavox so I can communicate somewhat easier.  Of course, when I  lose the use of my left hand, which may be sooner rather than later, that will be my only means of communication. I will have to say goodbye to my trusty iPad. I hope I don't have to say goodbye to Words with Friends.

Wrapping my head around this

As the days dwindle down, I keep asking myself how I will really feel when my time comes. How do I imagine death? Or what comes after? I don't really care if there's a Heaven, and I hope there's no Hell (swear there ain't no heaven and I pray there ain't no hell--thanks, Blood, Sweat and Tears!), and oblivion doesn't worry me, and reincarnation sounds interesting, so it's really just the process by which I'm fascinated. I was always a process person.

I want to go peacefully, but to do that morphine has to play a factor. And probably Atavan, an anti-anxiety med. Unless I'm just not anxious at the end. Which could happen. I can think myself through this, as I do when I'm alone and have a breathing issue. I just slow down and reposition my powerchair and try to control my breathing.  Maybe I can do the same thing, with morphine keeping the air hunger under control, as I pass. I want to be conscious when I do, if the two things aren't mutually exclusive.

If they do exclude each other, and I imagine they do, then I guess morphine-induced loss of consciousness is the way I'll go. I don't want Paul and the kids to see me gasping for breath at the end.

So, does the world cease to exist because I am no longer there to perceive it? Of course not, as people  die constantly and the world plugs along. But since I can only view it from my perspective, for all intents and purposes, it ends for me. Legacy is all we strive for: our children, our reputation, and some material things we leave behind. I think I'm comfortable with my legacy.

In praise of hospice caregivers

I need help with everything nowadays. And, I'm blessed to have Bear Paw Hospice in our lives since April. The best part is my visits twice a day from my CNA, Yolanda. She arrives each weekday at 8:30 and does range of motion (I liken it to massage for an ALS patient), and then cleans me and dresses me. Dolan is then called to lift me out of bed into my powerchair. Then she gets me food. She used to cook me eggs, but now all I ask for is boost. She leaves at 10:30.

She returns from 4-6, and is such a good companion. Some days she has to deal with my bm issues, but she takes care of things efficiently and never makes negative comments. In fact, she says the one word she doesn't want to hear from  me is "sorry."

Once a week the RN comes to check vitals and chat. Liz comes most, but Deb comes now and then. They are the ones who check meds and find out how healthy a terminal person can be. I always say, I'm the healthiest dying person I know!

Once a month we are visited by the social worker. Charlene just has heart to hearts with each family member, to ensure we all are okay emotionally.

So we are all blessed. Hospice allows my family to live their life while knowing I'm cared for professionally. Paul and Dolan can work and Caroline can still enjoy her teens. And when things get to the end game, they will help bring us to a peaceful close to this chapter.

All terminal diseases are hard. Thankfully, Bear Paw Hospice travels this arduous path with us.

Food memories

When I've had morphine, I tend not to have an appetite the next day. So earlier today I thought of food that was memorable to me. After 56 years, not too many things came to mind, actually.

Whataburger shared with Dad in Colonial Heights, Virginia.
Numerous Weiner schnitzel dinners while living in (West) Germany.
Cheese Shop sandwiches in Williamsburg, Virginia.
Dirty Deli/Paul's Deli sandwiches in Williamsburg.
Perfect tiramisu in San Diego.

My mom's steak and kidney pie, roast beef and Yorkshire pudding, cheese pasta in a pot.

I think I always had a relatively safe relationship with food. I ate to live, not lived to eat. Never a foodie. Never too skinny or too fat. I binged and purged once in a while, sure, but who didn't in the 70s and early 80s? But why am I using food deprivation as the end game? Looking to disappear?

I like this video, but it doesn't apply to me. I don't think it does, anyway.

Blessings

As difficult as my illness is, I am blessed by how many people who have written to me over the past 3 years telling me what I mean/t to them. What more can I ask, than to hear the good things people think about me before I die?

An update on the passing of my friend Chris. I googled her partner, Kip, and today found out they died the same day: April 6, 2015. So now I am left wondering if they were in an accident or if they did assisted suicide together (both had cancer). Or both happened to die on the same day for other reasons. I sent an email to Chris' sister at her work; I hope she responds. And I regret not sending Chris a letter saying what she meant to me.

Friendships have brought me such joy and dare I say validation over the span of my life. Yes, I feel the need to be loved and to express love. That elucidates the headstone inscription, doesn't it? I have a sense given to me by others over the years that wanting to be loved is a weakness. However, I always ascribed to the ideal to treat others as you want to be treated. And I need to be loved, and thank God, I have been well-loved. I only hope the people I have touched feel loved and well-treated by me.

I read somewhere that a taciturn New Englander was asked if he thought he was a "good" man. He said in reply: "You'll have to ask my neighbors."  We may all think we are good people, but it is in how we are perceived that we know for sure.

Two hawks

Dolan and I started our trip home by stopping in Opportunity to say goodbye. We got out because it was so beautiful. I did have a breathing issue, but when I lowered my chair back to help my breathing, I was treated to a blue sky seen through beautiful green boughs, and two hawks circling above. They were joined by swallows. I could revel in my view while dealing with my challenged lungs. Each day is truly joyful, even as I reach the end.

I am not eating or drinking much. I am contemplating having my catheter removed. Since I have to wear diapers all the time now, it seems redundant. And the big decision? When to cease intake of food and water, my chosen exit. I am beyond tired of just staying alive to watch tv (although I did begin The West Wing again!).

I've said my goodbyes, the family is prepared. Anytime now, God!!

Headstone in place!

We planned to at least see our headstone, realizing having it installed would take more time. So when Paul and I took a drive Tuesday morning to the cemetery office to see it, we were disappointed that it was all locked up. Still, Paul and I drove to the plot so he could show me the base he helped install. There, much to our surprise (and delight!) was the headstone placed perfectly on the base.  So here it is!

Yesterday was the big party, my fave picture was the one of Dolan and Rocky.

Family time in Opportunity

We are gathered at the Tuss compound in Opportunity, near Anaconda. It's a joint celebration of the birthdays of Liz Tuss (40), Caroline (16), and Peyton (16). Plus cornhole games, lots of family, bikes, volleyball, beer, pop, barbecue, birthday cake, and stories. I've been coming here for 28 years.

It's good to be with my extended family, but my health prevents me from enjoying much. We are at almost a mile elevation here, and the thin air does impact my breathing. Although I wear my biPAP more, it doesn't provide oxygen. It just gives my lungs a break. I must be about 33% capacity, so less oxygen makes it challenging.  Add the three or four smokers and charcoal and woodsmoke, and even outside it's tough.

Of course, a house built in 1930-something isn't accessible, so we depend heavily on good weather or I have to go in the carport or back to the motel. Yesterday it rained off and on, so I was in the motel. It only makes me sad that Paul or one of the kids has to stay with me and can't interact with the family. I am used to being alone at home, but here is hard.

Still, I'm glad I'm here. Family is all-important to me, and always has been.

Family at Philipsburg (above) and Tuss cousins at Opportunity (below)

Almost forgot! 3 years today!

Three years ago today I was diagnosed with ALS. Back then I walked with a limp. Today I am down to using slightly curled left fingers to type, and I can no longer speak clearly. I can't move the rest of my body except to turn my head.

I read of other PALS who will do anything it takes to stay alive. That's not for me, though. To each their own, but my idea of living involves no tubes and lots of physical activity. If that's not possible, I'd rather fade to black.

Watching the. Democratic Convention

I am watching the convention app, which means I don't have to listen to talking heads interrupting. Concurrently, I am dealing with a phlegm clog. A little morphine helps me relax my trachea and forget about it. And then I can revel in Michelle Obama and Elizabeth Warren. And marvel at the diversity of our convention-goers, especially in comparison to the Republican convention. We look like America. The. Beautiful.

My day starts at 8:30 with a hospice visit from Yolanda, my CNA. I am blessed to have her. She does great ROM. It almost feels like a massage. For my first and only official caregiver, I have lucked out.

Now Bernie Sanders takes the stage. Is he ever going to mention Hillary? Oh good, he did. I hope his followers act like we, Hillary supporters in 2008, did and vote for our party's candidate in November.

Tomorrow is my 56th birthday. I am fortunate to reach that milestone, definitely. So many millions don't. Still, each night I pray "my soul to take," and I mean it quite literally. God can take me anytime now. Once I lose my voice totally (today was pretty bad), and my left hand fingers give up, I have lost my methods of communication. The frustration that engenders in everyone, not least of all me, makes me want to give up the effort. So given my previous talks with my nuclear family, they are prepared at any time to say goodbye.

That doesn't mean each day doesn't have its joy. It just means I am ready to let go. I am at peace with what is happening.